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End Of Life? - Page 3 - Carers UK Forum

End Of Life?

Share information, support and advice on all aspects of caring.
bowlingbun wrote:
Mon Nov 18, 2019 12:40 pm
Broostine, have you made your own plan for your future when caring is over?

I found that I fell over a "Cliff of Tiredness" after my own mum passed away.
As carers we just keep plodding on even as the path gets progressively harder, and harder.
Whilst having a caree in hospital or nursing home is seen by some as the caring role being over, it isn't, far from it. It just brings a different set of challenges!

I had a holiday booked towards the end of mum's life, and the GP ordered me to go, whatever happened, to protect my own health.
Clearly your situation is different, but I would urge you to plan to go away somewhere, even if it's just for a few days. Just getting away from it all for a few days - even just an hour's drive away can be enough - can be helpful.
I found small self catering annexes were better than B&B, as I could get up when I wanted, go to bed when I wanted.
The first time I went away, I got up about 7am, had tea and toast and went back to bed with a book until almost midday, I was so exhausted.
Just bear this in mind.
Is your employer aware of the situation, and the requirement to "make reasonable adjustments" for you, as you are "disabled by association"?
Hi BB,

I have a whole host of plans for when my caring role has finished (though, I am also making sure I don't plan to rush them all because I know I'll be 1) grief-ridden and therefore exhausted and 2) all of the time spent caring will catch up with me and I know I'll get ill/extremely tired). I don't know if this is the 'right' way of saying what I'm trying to say so bear with me- I'm actually quite grateful I've lost someone close to me before because now I know what to expect for the grief-side of things- I know to take it easy and not to fight against the tidal waves when they occur, if that makes sense. I know things will be a bit worse this time around because Gran is my 'primary caregiver', so I'm mentally preparing for that.
I've been saving to buy a house with my fiance for a long time- by the middle of next year, we'll have enough saved to start looking. I've also been engaged since 2016, so hoping to start planning the wedding properly. There are so many breaks/holidays on the cards (I want the first one to be UK-based, preferably in a cottage in the middle of nowhere, with loads of books to read, a roaring fire and a hot tub! It'll definitely be a chilled one, to try and recover from the time spent being run ragged for the last 18 months).
There's honestly so many things I've planned for (I've just felt guilty for such a long time because I know that, in order for my life to 'start', Gran's has to end- it's hard coming to terms with that fact, as I'm sure you'll appreciate).
My work have been brilliant from the beginning, to be honest- every time there's been an emergency or something like it, they've been saying 'just go and don't worry about when you'll be back'. I can't thank them enough for how they've treated me, in that respect.
The one thing I certainly will be doing is cutting off from the rest of Gran's side of the family, once she's gone- I cannot forgive them for barely being there for her throughout this whole ordeal (I think it will take me all of my strength not to scream at them all and say exactly what I think of them when I am no longer worried about upsetting Gran). I flat-out do not want anything to do with them. In particular, it'll be her son and sister I want to avoid- the son has done sweet eff all throughout the whole ordeal (he hasn't even seen her for a month). The sister has borrowed 2K off my Gran since she has been bedbound- I find it absolutely disgusting that she'd even consider asking a dying woman for money like that (only a week after borrowing the second K, she called me up and moaned about 'having' to go and see Gran in the evenings)- I cannot forgive it.
You deserve every bit of happiness in your future home with your fiancé - only hopefully you will have a happy wedding to look forward to.
My son and I have stayed in a number of Sykes Cottages, you can search on their site for open fires and woodburners. We have a woodburner at home, where we stayed in October said it had a woodburner but it was actually electric. M was not amused!! Especially at this time of the year, their rates are very low, and even lower if you book at the last minute. Bear this in mind.
I know exactly what you mean about having lost someone previously you know what to expect. Sadly, it's a fact of life that people die, however much you don't want it to be like this. Six of my close family have now passed away, we reached the point where we felt "here we go again.."
I too have now decided that my younger brother and family, and older brother's family, were only interested in mum's money, "too busy" to support her when she would have loved to see them, even if it was just for an hour or two.
Thank you, BB- it's so refreshing to talk to someone that actually understands!

I have looked at that cottage holiday site before- I will definitely be using it when the time comes. As we've not been able to go away even overnight, we've got enough 'in the pot' to be able to afford something quite lavish, thankfully! It'll be so strange to go for the one we like most, rather than the cheapest, for a change!
Definitely empathise with you RE the amount of people in the family passing away- in mine, first it was my Mum, then my Great Auntie, then Great Uncle, then Auntie on Dad's side and soon it will be my Grandad on Dad's side, as well as Gran, of course. Seems to be the case that everything comes all at once and then you get a few years' 'peace' afterwards- not sure whether it's better to have it all thrown at you at once or whether it's better to 'get over' one before the next one hits- what do you think?
My children are now 40 and 42. They were lucky to live midway between both sets of grandparents, about 4-6 miles in different directions. All lived until the "boys" were adults.
Inevitably, that meant that they were all likely to die within a few years of each other. We had 14 horrendous years, at one time all four parents were entitled to highest DLA Care, one too stubborn to apply! Every Christmas one or other was in hospital, as if they had a rota. All wanted us, not anyone else, to care for them. My father in law died in 2003, at the age of 87. My husband died just three years later of undiagnosed heart disease. I developed kidney cancer, major surgery saved my life. My brother died of pancreatic cancer, and mum died a year later.
Unfortunately, 2006 was also the year my son's care home closed, and he moved into "supported living". I've been battling ever since!!!
My God, BB! I don't know how you managed to keep going through all of that! You're like the fairy godmother of the care world!
bowlingbun wrote:
Tue Nov 19, 2019 1:41 pm
My children are now 40 and 42. They were lucky to live midway between both sets of grandparents, about 4-6 miles in different directions. All lived until the "boys" were adults.
Inevitably, that meant that they were all likely to die within a few years of each other. We had 14 horrendous years, at one time all four parents were entitled to highest DLA Care, one too stubborn to apply! Every Christmas one or other was in hospital, as if they had a rota. All wanted us, not anyone else, to care for them. My father in law died in 2003, at the age of 87. My husband died just three years later of undiagnosed heart disease. I developed kidney cancer, major surgery saved my life. My brother died of pancreatic cancer, and mum died a year later.
Unfortunately, 2006 was also the year my son's care home closed, and he moved into "supported living". I've been battling ever since!!!
That must be tough!

You are a saint truly.
Thanks for your lovely comments, you've actually only had about half the story!
In total I've had TEN carees, from newborn to 87. You name it, they've probably had it, dementia, bowel cancer, prostate cancer, pancreatic cancer, heart disease, angina....
When mum was in the nursing home she had a Critical Care Assessment. Just one elderly lady had 24 different health issues, but still didn't qualify for CHC!
bowlingbun wrote:
Wed Nov 20, 2019 6:49 pm
Thanks for your lovely comments, you've actually only had about half the story!
In total I've had TEN carees, from newborn to 87. You name it, they've probably had it, dementia, bowel cancer, prostate cancer, pancreatic cancer, heart disease, angina....
When mum was in the nursing home she had a Critical Care Assessment. Just one elderly lady had 24 different health issues, but still didn't qualify for CHC!
That's horrendous- I don't understand how CHC is denied for so many people who clearly meet the 'criteria'. Fortunately, Gran had her 3-monthly CHC review on Tuesday and it was granted (I don't think any of us would cope if that wasn't the case).

I have a bit of a question about an incident that happened on Tuesday evening. I went to the nursing home, as usual, at 5pm. Gran's door was closed, which usually means the carers are in the room, toileting her and changing her into her nightie. I waited about 5 minutes and then started hearing pained moans... they got louder and louder until I heard a scream of pain. I burst through the door to find my poor Gran sat on the commode (we don't know why this is the case, but she cannot sit in a chair for more than 5 minutes without her legs being in agony- we suspect she's got peroneal nerve damage). I ran around Gran's floor of the home, trying to find the carers- they were in someone else's room (the person's husband was sat outside and suggested I knock on the door and go in, so I did). I basically screamed at the carers, saying Gran was screaming and to get back there asap. I was met with a 'we'll see to her when we're finished here'. To me, that wasn't acceptable (at this point, I could hear the screaming in the corridor). I ran downstairs and found a load of carers getting ready to serve the evening meal, told them the situation and one of them agreed to come up. She had to go and fetch another member of staff so that the hoist could be used- the only available person was the on-duty nurse. 5 minutes later, the original carers turned up and finished sorting her out, apologising to Gran.
Now, once things had calmed down, Gran told me that these two particular carers didn't know about her leg issue and so not to complain about the issue. However, I have repeatedly told several members of staff about the issue and it should be well-documented in Gran's notes.
I really don't want to see this scenario happen again (to be honest, I couldn't stop shaking all night afterwards, it was that upsetting). Would you guys say it's 'fair' to give the carers a 'second chance'? I am very worried about re-occurrence because we're getting close to Christmas and I've already heard carers talking about the annual leave they're rota'd for- very worried that the staff shortage will make the issue more likely to happen again.
Tell CQC, they need to know about this incident. Please don't ignore it, there may be others treated the same, who don't have relatives to speak up for them. No one should be left screaming in agony.
By rights, the carers ought to have looked at her care notes before leaving her like that. Leaving her unattended on the commode, when she needs a hoist, to attend to other remote carees is wrong to me!